Has this been talked about?

Discussions for Patients, Family, and Friends HD For Patients
1

The big problem that I have with both in center and home, is that the people ,we deal with think that all we have to deal with is our problem.

With me I run a house hold and take care of my mother who has Alzheimer’s. Anyone who runs a house hold knows what that deals with. With my mom here I running to dr. for her to see if anything can help her. In helping her it will help me.

Maybe it me ,but when you talk with people at center or home team. I come away thinking that the only concern they have are your #s. I’m just another # to them ,if my # are good they are happy if not they tell you you must bring this # down .2 point in order to be the range that is normal.

bobeleanor :?:

2

I hear you loud and clear, and yes deal with this all the time! When I started dialysis no longer went out to work and people would constantly ask me “now that you’re home all day and not working you must be bored”. At the time I had an ill mother in and out of the hospital plus her husband’s family to deal with, and that was no picnic. On the days I didn’t have dialysis and wasn’t ill (problems with txs.) I dragged myself around to nursing home, hospital, ect. and when wasn’t doing that was on phone, at ss office and social services ect… trying to straighten out things for Mom. My adult son who lives at home with us is ill and can’t be left alone too long and I take care of him and his appts. ect… People don’t consider these things “work”. Those who go out to work and get paid think being at home is a picnic in the park. Even some other dialsyis pts. want to know “why don’t you work?” I’m constantly told by people that I should “work” because it’s good for me. If they only knew! All this and keeping house lol I want to do home hemo so I have more energy and time at home to do even more, if that makes sense. I constantly have to educate people to the fact that dialysis pts. in center go for txs. three days per week and it takes more than an hour, plus traveling. Most are shocked, believing it’s the equivalent of a Drs. appt. once a month or so. I would gladly go back out to work with no dialysis; I’ve never worked so hard or had so much to do as now. Good thing they keep my hgb. up lol Lin.

3

I hope you’ve told your social worker the stresses you have. This is something that the team should know so they don’t bug you about working just now. Working is beneficial for most people, but right now, you’re working as hard – or harder – than anyone who is getting paid to work. Sometimes staff forget that patients have lives away from dialysis. I think it’s important them to know about that “other life.” It gives them better perspective and hopefully makes them more understanding of their patients’ concerns.

4

And some of us spend a lot of time studying our tx and helping others understand theirs. And some of us even work to ensure better standards in dialysis :smiley:

5

It’s good to stay active and productive if possible, but no one should every question or assume that someone who doesn’t have a paying job isn’t productive or working. I wasn’t able to continue working at the job I had for many reasons, but when I first started dialysis a man next to me at the unit would always question why I didn’t work because HE did. Well, he went out to work at a desk job and did nothing else. He and his wife could afford to have people do the lawn work, house repairs ect… His wife did all the housekeeping , errand running, bill paying ect… but in his mind just because he was cutting a paycheck he was working and I was just sitting around on the sofa eating bon-bons. Even still, when the social workers come around and ask “do you work at all” what they mean is do you have a paying job; as of yet not one has asked what I do on non dialysis days, or they want to “rehab” me so that I can “work”. We really need to define work better because it’s really insulting for those of us who stay home and work as it stands. Lin.

6

Interesting Lin,

Many of us on dialysis probably feel the same…for the most part I know a few young people who did laborous work, packing, lifting heavy crates…then later on they lost kidneys. Now they cannot work as vigorous as they use to be, all the energy has vanished. They’ve tried helping them keep their jobs but didn’t work, so they get on disability. However, their employers have not fired them yet but I guess they have a good long while to adjust to dialysis…perhaps a few years…and I think we’re all different in terms what we want to do. For example, I am a career student and would I consider schooling work? Of course! Even working for free is work…in the community there’s all kinds of work out there…and beeing active taking part is a healthy choice for a dialysis patient. It simply helps us keep going.

Sometimes I do feel like a couch potato… :roll:

7

My point was that a paycheck in and of itself doesn’t mean one is working! I no longer have a paying job; I worked in healthcare and although I wasn’t out and out fired I was told that I wasn’t suitable for the job anymore, something in my mind I knew but my heart didn’t catch on. I cried at first but knew they were right. I don’t like to waste time on unproductive things so I moved on. Good thing to because there were problems with txs., an access problem ect., all things not compatible with working one on one with a home healthcare pt… People in this line of work must be very dependable; there is no one to take your place most of the time. I go to dialysis three days a week and crash and burn after, have an ill son to care for, and all of the house stuff. There simply isn’t any time or energy left over for “working” lol I am defensive of those of us who stay at home and work because I feel we are often overlooked or thought to be copping out, or thought to be giving up in some manner, and although that may be true of some it’s not true of most. Those who have never stayed home caring for house and family full time simply have no idea what it takes, add to that the three days of dialysis.
I trully do hope home hemo gives me some more energy; I sure could use some! If that is why those on home hemo seem to do more I’m more than willing to give it the go; some day hope to come back here perky Lin… and then you can say “told you so” Lin.

8

In 1972 when Congress passed and Nixon signed the P.L. 92-603 that amended the Social Security Act to extend Medicare coverage to people with kidney failure, Congress did so because those lobbying for the law told them that doing so would help more people be able to afford an expensive treatment that would keep them alive and allow them to keep working or return to work. In those days, most patients were young white males who were employed and insured. Children and the elderly were not dialyzed. Neither were people with other serious illnesses. Some people faced selection committees that selected who would live and who would die.

As demographics of the ESRD population changed from young mostly healthy working males with no other health conditions to the population that is on dialysis today, the number of working ESRD patients has dropped. In case you haven’t been able to tell from my other posts, I am a rehabilitation evangelist and believe that ESRD treatment is often not “adequate” enough and there are barriers that the system itself erects that keep people from working. My goal and the goal of people like me is to help more patients keep their jobs and feel well enough to work or at least to return them to at or near their level of functioning before kidney failure.

The reason why the social worker asks you if you are working for pay is that once a year a report must be filed with the government that tells how many patients (not by name) ages of 18 through 54 are working for pay. If you started dialysis or if you got a transplant before dialysis in the U.S. in the last ten years or so, you were asked questions about your work status now and 6 months before. The categories on that form are: unemployed, working full-time, working part-time, homemaker, retired due to age/disability, retired (disabled), medical leave of absence, and student. Here’s the link to the current form:

One reason for asking these questions is to see how good a job the ESRD community is doing at returning people to their previous level of functioning. If someone was working 6 months before and continues to work or returns to work after taking time off to adjust to kidney failure, one can assume that the treatment team is doing a good job of providing the best treatment possible for that patient in the setting that makes work possible. On the other hand, if the person was working full-time before and now is retired disabled, perhaps there are things that the treatment team could be doing to improve the physical, emotional, and vocational well-being of that patient and to reduce treatment barriers.

I would love to see the federal government ask about the other categories of employment as well and have repeatedly asked for that. In my opinion, if the person was a homemaker before and is still taking care of his/her home and children, in my book, that’s rehab. The same is true if someone was previously retired and still enjoys retirement activities or those who were students and are still in school. The goal of dialysis should be to not just take care of kidneys, but to care for the whole person and empower him or her to achieve the maximum level of functioning possible.

Another goal is to show the federal government that the ESRD program – that in 2004 cost over $15.6 billion to care for 320,404 dialysis patients and 10,602 transplant patients – is doing its best to fulfill the promise of what Congress was told back in 1972…to keep people working or helping them return to work where they could be tax paying citizens. Here’s a brief summary of the data for the ESRD program:
http://www.cms.hhs.gov/ESRDGeneralInformation/Downloads/2004ProgramHighlights.pdf

Please don’t take it personally when your social worker asks you these questions. If you’re not doing as well or nearly as well as you were doing prior to kidney failure, in my opinion, it’s an indictment of the renal community. We are not providing optimal dialysis, helping people to access the resources they need, and not offering enough people treatment options (home dialysis and transplant) that would allow more people fulfill their goals and dreams.

9

With all due respect Beth there may be other things that enter into the picture, plus three txs. a week plus traveling to and from and the other tests, appts. and medical stuff take up more time and energy than most people realize, not leaving much time and energy left over for a paying job. If you are a dialysis pt. who also takes care of aging parents, sick children, ect… , as many women do that adds also to the “work” load.
I always wonder if I’m doing ok on incenter but my labs look good and clearances are 76 and above. Since going on dialysis I was dx. with RA and told my leaky heart valve has gotten worse, things which have nothing to do with dialysis. I don’t expect staff or my social worker, or anyone else to take blame for that; dialysis is only one part of my picture. I do see also that many other dialysis consumers are in the same boat so judging how well someone is doing merely by if they still hold a paying job is not a fair or adequate assessment. I respect that there are those such as yourself who try to rehab and get people back on the tax paying rolls, especially those who have no other maladies except dialysis. Lin. (not just dealing with dialysis)

10

I find that there’s always something coming up, whether it’s appointments with one specialist or another, hospital procedures for this or that, dialyzing at the unit for some reason, deliveries, maintenance visits, hospitalizations now and then, retests for the transplant waiting list (not to mention the unpredictability of the waiting, calls to come in as reserve recipient, unpredictability of recovery afterwards), etc. And that doesn’t include the actual dialysis time, nor does it take into account other co-morbid medical problems people might have, days when you might not feel that great. For example, the frequent smog alert days we have now really get me down.

Good luck if you don’t already have a good position with some kind of tenure or security before you have to start dialysis. And if you do have that kind of job, where do you find time to exercise adequately and to prepare the food you need to eat?

… or maybe I’m just a lazy bum and I was masquerading as a good worker all those 25-30 years before :slight_smile:

Pierre

11

Lin, Beth and I do recognize how difficult it is to keep a paying job on in-center dialysis–even if you don’t have other, competing life tasks that take up time and energy. As you’ve said, the time it takes to go to and from a center (not necessarily on a schedule you choose), plus the feeling “washed out” after a treatment all contribute to making in-center dialysis a part-time job that most often isn’t compatible with work. Some folks are fortunate enough to feel really good on in-center hemo, and to have a flexible job that will allow them to put the two together. But this is the exception–not the rule.

This site is for home dialysis, though, and we’ve done research that demonstrates pretty conclusively that people who choose work-friendly treatments like transplant and PD are significantly more likely to keep working than those who do in-center hemo. (We believe that home hemo will be the same, but don’t have those data yet, since the numbers are still small). One of the reasons we developed this site is so that folks whose kidneys are failing will know that there are treatment alternatives that will allow them to have the energy and the schedule to keep their jobs and their health plans.

Social Security Disability only pays about 35% of previous income. About one in four people may also have a private (mostly through work) disability policy that may pay 60% of previous income, though these may subtract Social Security benefits before they pay. For many people, loss of this much income is something that can push a family into poverty–something we adamently want to prevent.

Even with other tasks at home, some people on dialysis must find ways to keep working for pay in order to pay the bills and not lose their homes. This doesn’t imply that everyone who is working-age needs to work, but it does mean that we’ll keep pushing our hardest to make paid employment possible for people who need it.

12

Sorry Dori and Beth, I was responding in regards to the original post which mentioned both incenter and home hemodialysis and how others treat you.
:oops: I will try to remember that this is only a home hemo site. I’m incenter but waiting so perhaps I get confused as to what I am or hope to be. Sometimes I feel like everyone is trying to rehab me because suddenly they think I’ve become a bum lol
No Pierre, no one thinks you’re just bumming around; you crack me up! Lin.

13

Hi

Like I said in my post I found the same way of thinking from both center people and home team. you don’t go somewhere to work ohh.

And to be honest, (I’m still new 12/05-today) home hemo is not a walk in the park. In another post I gave the time it takes for to do a tx on nxstage(4.5hr). Between txs, shopping , laundry , drs. centers, house cleaning, lawn etc. I don’t have time to work pt let only ft. I"m thinking down the road of looking into nocturnal dialysis. I want to see if that lets me have more time when I"m up. I"m still learning the ropes. And yes Beth, I have talked with soc, if I had my way, he would be the only one I would want to talk to when I go to the center.
bobeleanor :slight_smile:

14

You guys know I’m a big booster of daily nocturnal hemo. But I’m only looking at it from the point of view of no diet, no fluid limit, no blood pressure medication, etc… If truth be told, I find that for me it’s actually more time consuming than when I was going in-centre.

Back then, I was in at 6, on by 6:30 and home by 10 three evenings per week. Now, I’m gradually starting at around 9, on by 10-11, off in the morning around 7 AM, totally finished by about 8 (although the machine is doing its stuff while I do other things in the morning). But I have to add to that at least one clinic appointment per month, one night per month when I have to take blood work and then drive it to the lab in the morning, plus one day for my dialyzer deliveries, one day for my dialysate concentrates delivery, and another day for my auxiliary supplies delivery (I only know the day for these, not the time). Not everything gets used up at the same rate, and so I have to always be aware of what I have, and then I have to prepare my 3 separate monthly orders. I have to make sure I don’t forget to call in and pick up my epo and iron prescription from the nephrology pharmacy, which I try to do at the same time I’m there for my clinic appointment. The upside is that besides that, my daytimes are free.

During the 4 months I was on short daily, I definitely found it more time-consuming, because no matter how fast I did or how I looked at it, each of those daily treatments seemed to take about as long as one in-centre treatment, plus I still had the delivery issues and other items I mentioned for daily nocturnal. Each short daily treatment takes up either the morning, the afternoon or the evening, and it’s every day except one… so, I don’t see much time saved there compared to in-centre.

Everyone is entitled to their opinion, but personally, I think it took a lot less time and effort to dialyze in-centre. I wouldn’t choose home hemo on the basis of gaining free time if I were you :slight_smile:

Pierre

15

Hi

I picked home for the simple of I could do my tx when I wanted. In the center I was in, my time was (1pm est to 5pm) and it did not matter if I was early or right on time,. If the pod I was in was backed up then my time was backed up. On those days I would not get on till 2 or 2:30 then off at 6. The place shut down at 6, no matter what. Plus I like the peace of being home. Like I said I"m new and still working on the right time to do tx. and if nxstage can be done on nights. The main reason I brought this up was to point out that home dialysis is very hard work on top of everything else one has to do in life. I will never go back to center for dialysis.
bobeleanor :smiley:

16

Dori and I along with several other home dialysis enthusiasts encourage home dialysis, and I do believe home is better. However, I’d hope that if you have a problem with your machine, you want to take a trip, or you or your spouse want to have a break from home dialysis that you remember that the center is there for you. It’s best to be home, but in most cases dialysis anywhere is better than no dialysis…at least unless no dialysis is because you received a transplant.

17

I would never say no for someone. If you think you can do a job and the pay and the benefits are right I say go for it. I started as a lowly apprentice tradeshow specialist in the carpenters union after being unemployed during my first three years as a dialyzor (and nearly 10 years after graduating from college with two degrees … Business and Accounting). I was dialyzing incenter at the time and would feel nauseous enough throw up biweekly but I worked my way up and now I have a comfortable journeyman job but I kicked out my share of carpet to get here.

I exercise at the gym, when I can … and it is hard to find time but I also walk my dog before and after work nearly everyday, which would be a healthy way to transition to/from work even if I didn’t have a dog. And, as a union guy, I have two 15 minute breaks a day and most times I’ll walk by the river by the shop and throw a stick for the dog. Weight sessions at the gym are great but I think the key is to just keep moving, even between visits to the gym. I park far from doors.

I think one timesavings hasn’t been discussed – the post treatment recovery time savings. Now it is true that I, like you Pierre, multi-tasked by sleeping through this recovery time when I was on the incenter evening shift but that should definitely be counted by those who don’t dialyze right before bed. But I think that figuring out how much time you actually spend directly on getting dialyzed or dealing with CKD5 is the wrong calculus.

For me the important calculus is that running nearly every evening after work, before bed, gives me the most high quality hours of productivity per a week – on dialysis/off dialysis … whatever. I think it is important to keep ones eye on the ball and I contend the ball is ones overall productivity. How ever one would self-reckon their personal productivity - that number should be maximized.

Set goals and high dose dialysis will help you achieve them.

Already achieving your goals while incenter? Then high dose dialysis will allow you to set higher goals.

18

Bill, Thanks! What you have said is exactly what I needed to hear. I feel ok incenter, and am not even sure how much of not feeling great is relative to dialysis in center, or just a combination of things as dialysis is not the only thing I’m dealing with. I won’t know till I get the chance to try home-hemo. I’m not concerned about how long it takes because now it takes me three days to do dialysis incenter with the drive to and from, tx, times, and then not feeling well afterward. I can still move lol, just not too fast, and I ache all over. I loved using my Bow Flex machine, taking my dogs on long walks ect… and it kept me in shape. I NEED to do those things again, and if home hemo can help me do that I’m there. Lucky for me I have support not only from my family, but those who do home hemo. Maybe I expect too much, but I’m only52 and not ready to throw in the towel; I’m only a youngster. I’m not a reall good traveller but I read your posts all the time and love the stories of your travels; sometimes feel like I’ve been there too. Gives us all something to aim for! Lin.

19

Hi Lin

You should definitely give yourself the chance of home hemo - the daily kind especially, no matter whether it’s short daily or daily nocturnal. Like I said, I don’t look at it in terms of time saved, but for the overall health benefits of dialyzing daily. There’s a huge difference as far as that goes. I just turned 53, so we’re about the same age. That’s not that old, of course, but it’s certainly puts us in a different category than someone who is in his 20’s or 30’s in how resilient our bodies are. Only speaking for myself, not you. Me, I started falling apart one day after I reached 40 :slight_smile:

What I can definitely say is that I can measure my personal improvement very easily just by looking at how much my exercise capacity has improved since I was on hemo 3 times per week. I’m still not able to leap tall buildings like in my youth, but I can tolerate a lot more exercise. Just that would be worth the trouble of home hemo, as far as I’m concerned.

That’s not to say that home hemo is perfect. Like I said before, I personally don’t think there’s that much time saving, and there IS a lot more responsibility… but it comes with a big payoff in terms of health advantages. It does take a lot of motivation, because trust me, it’s a lot easier (I said “easier” not “better”) to just show up at the dialysis centre 3 times a week. There will be times when not everything goes well and when that happens, it’s very frustrating. I believe in being positive, but not in fantasy.

Pierre

20

Hi

I don’t want anyone to think that home is so hard I will give up on it. It just that I’m new and need to get thing in order. Getting on dialysis was a wake up call loud and clear. Right now I’m doing dialysis at (5 am est) and I’m done by (8:30 am). Plus I’m getting things back in order here at the house.

Beth, my trip in the center only two, were very bad. I love very much my private life. Ihave worked very hard over the last 15 yrs. to get my house in the woods and only go out when I need too. The centers were very very loud and not private at all. Most of the people I saw one on one were very nice.
bobeleanor :smiley: